Ten years of the International Patient Decision Aid Standards Collaboration: evolution of the core dimensions for assessing the quality of patient decision aids

In 2003, the International Patient Decision Aid Standards (IPDAS) Collaboration was established to enhance the quality and effectiveness of patient decision aids by establishing an evidence-informed framework for improving their content, development, implementation, and evaluation. Over this 10 year period, the Collaboration has established: a) the background document on 12 core dimensions to inform the original modified Delphi process to establish the IPDAS checklist (74 items); b) the valid and reliable IPDAS instrument (47 items); and c) the IPDAS qualifying (6 items), certifying (6 items + 4 items for screening), and quality criteria (28 items). The objective of this paper is to describe the evolution of the IPDAS Collaboration and discuss the standardized process used to update the background documents on the theoretical rationales, evidence and emerging issues underlying the 12 core dimensions for assessing the quality of patient decision aids. © 2013 Volk et al; licensee BioMed Central Ltd

The Impact of COVID-19 on Smoking Cessation Motivation and Lung Cancer Screening in Quitline Clients

https://openworks.mdanderson.org/sumexp23/1044/thumbnail.jp

Adherence to diabetes self-care behaviors in English- and Spanish-speaking Hispanic men

We conducted a qualitative study to elicit attitudes, attributions, and self-efficacy related to diabetes self-care in both English- and Spanish-speaking Hispanic men. Transcripts from six focus groups (three in English and three in Spanish) were reviewed by the authors to extract principal and secondary themes. Participants could describe their medication and lifestyle regimens and were aware of whether they were adherent or nonadherent to physician recommendations. Lack of skills on how to incorporate diet and regular physical activity into daily living, lack of will power, and reluctance to change culturally rooted behaviors emerged as significant barriers to diabetes self-management. Medication adherence is for some men the principal diabetes self-care behavior. Nonadherence appeared to fit two profiles: 1) intentional, and 2) nonintentional. In both instances low self-efficacy emerged as a significant influence on attainment and maintenance of diabetes self-care goals. Participants also expressed a strong sense of fatalism regarding the course of their disease, and seemed to have little motivation to attempt long-term dietary control. Educational and counseling messages should stress that a diagnosis of diabetes is not a death sentence, and full functional capacity can be maintained with good control

Principal Investigator Views of the IRB System

We undertook a qualitative e-mail survey of federally-funded principal investigators of their views of the US human subjects protection system, intended to identify the range of investigator attitudes. This was an exploratory study with a 14% response rate. Twenty-eight principal investigators responded; their comments were analyzed to show underlying themes, which are here presented along with supporting quotations

Characterizing flows with an instrumented particle measuring Lagrangian accelerations

We present in this article a novel Lagrangian measurement technique: an instrumented particle which continuously transmits the force/acceleration acting on it as it is advected in a flow. We develop signal processing methods to extract information on the flow from the acceleration signal transmitted by the particle. Notably, we are able to characterize the force acting on the particle and to identify the presence of a permanent large-scale vortex structure. Our technique provides a fast, robust and efficient tool to characterize flows, and it is particularly suited to obtain Lagrangian statistics along long trajectories or in cases where optical measurement techniques are not or hardly applicable.Comment: submitted to New Journal of Physic

NGC 346 in The Small Magellanic Cloud. IV. Triggered Star Formation in the HII Region N66

Stellar feedback, expanding HII regions, wind-blown bubbles, and supernovae are thought to be important triggering mechanisms of star formation. Stellar associations, being hosts of significant numbers of early-type stars, are the loci where these mechanisms act. In this part of our photometric study of the star-forming region NGC346/N66 in the Small Magellanic Cloud, we present evidence based on previous and recent detailed studies, that it hosts at least two different events of triggered star formation and we reveal the complexity of its recent star formation history. In our earlier studies of this region (Papers I, III) we find that besides the central part of N66, where the bright OB stellar content of the association NGC346 is concentrated, an arc-like nebular feature, north of the association, hosts recent star formation. This feature is characterized by a high concentration of emission-line stars and Young Stellar Objects, as well as embedded sources seen as IR-emission peaks that coincide with young compact clusters of low-mass pre-main sequence stars. All these objects indicate that the northern arc of N66 encompasses the most current star formation event in the region. We present evidence that this star formation is the product of a different mechanism than that in the general area of the association, and that it is triggered by a wind-driven expanding HII region (or bubble) blown by a massive supernova progenitor, and possibly other bright stars, a few Myr ago. We propose a scenario according to which this mechanism triggered star formation away from the bar of N66, while in the bar of N66 star formation is introduced by the photo-ionizing OB stars of the association itself.Comment: Astrophysical Journal, In Press. 10 pages, 4 figures, emulateapj LaTeX style. Figures with Scaled-down resolution. Related Press Releases: http://www.nasa.gov/mission_pages/spitzer/news/spitzer-20081008.html and http://www.eso.org/public/outreach/press-rel/pr-2008/pr-34-08.htm

Balancing the presentation of information and options in patient decision aids: An updated review

Background: Standards for patient decision aids require that information and options be presented in a balanced manner; this requirement is based on the argument that balanced presentation is essential to foster informed decision making. If information is presented in an incomplete/non-neutral manner, it can stimulate cognitive biases that can unduly affect individuals' knowledge, perceptions of risks and benefits, and, ultimately, preferences. However, there is little clarity about what constitutes balance, and how it can be determined and enhanced. We conducted a literature review to examine the theoretical and empirical evidence related to balancing the presentation of information and options. Methods: A literature search related to patient decision aids and balance was conducted on Medline, using MeSH terms and PubMed; this search supplemented the 2011 Cochrane Collaboration's review of patient decision aids trials. Only English language articles relevant to patient decision making and addressing the balance of information and options were included. All members of the team independently screened clusters of articles; uncertainties were resolved by seeking review by another member. The team then worked in sub-groups to extract and synthesise data on theory, definitions, and evidence reported in these studies. Results: A total of 40 articles met the inclusion criteria. Of these, six explained the rationale for balancing the presentation of information and options. Twelve defined "balance"; the definition of "balance" that emerged is as follows: "The complete and unbiased presentation of the relevant options and the information about those options-in content and in format-in a way that enables individuals to process this information without bias". Ten of the 40 articles reported assessing the balance of the relevant decision aid. All 10 did so exclusively from the users' or patients' perspective, using a five-point Likert-type scale. Presenting information in a side-by-side display form was associated with more respondents (ranging from 70% to 96%) judging the information as "balanced". Conclusion: There is a need for comparative studies investigating different ways to improve and measure balance in the presentation of information and options in patient decision aids

Delivering Patient Decision Aids on the Internet: Definitions, Theories, Current Evidence, and Emerging Research Areas

Background: In 2005, the International Patient Decision Aids Standards Collaboration identified twelve quality dimensions to guide assessment of patient decision aids. One dimension — the delivery of patient decision aids on the Internet — is relevant when the Internet is used to provide some or all components of a patient decision aid. Building on the original background chapter, this paper provides an updated definition for this dimension, outlines a theoretical rationale, describes current evidence, and discusses emerging research areas. Methods: An international, multidisciplinary panel of authors examined the relevant theoretical literature and empirical evidence through 2012. Results: The updated definition distinguishes Internet-delivery of patient decision aids from online health information and clinical practice guidelines. Theories in cognitive psychology, decision psychology, communication, and education support the value of Internet features for providing interactive information and deliberative support. Dissemination and implementation theories support Internet-delivery for providing the right information (rapidly updated), to the right person (tailored), at the right time (the appropriate point in the decision making process). Additional efforts are needed to integrate the theoretical rationale and empirical evidence from health technology perspectives, such as consumer health informatics, user experience design, and human-computer interaction. Despite Internet usage ranging from 74% to 85% in developed countries and 80% of users searching for health information, it is unknown how many individuals specifically seek patient decision aids on the Internet. Among the 86 randomized controlled trials in the 2011 Cochrane Collaboration ’ s review of patient decision aids, only four studies focused on Internet-delivery. Given the limited number of published studies, this paper particularly focused on identifying gaps in the empirical evidence base and identifying emerging areas of research. Conclusions: As of 2012, the updated theoretical rationale and emerging evidence suggest potential benefits to delivering patient decision aids on the Internet. However, additional research is needed to identify best practices and quality metrics for Internet-based development, evaluation, and dissemination, particularly in the areas of interactivity, multimedia components, socially-generated information, and implementation strategies